confused and confused again

[mykids247]

This is my second posst and not even sure I'm foing this right, not real technical. But here goes. Diagnosed two months ago with hep c geno type 2. Alt and ast both around 200 plus. quantitation in the 2 million range. White blood count low 2.1 and platelets 62. Md. says he cant treat me.TRying to find another Md. or just roll over. I feel great, work 40 hours a week no symptoms YET md (primary care) tells me I am very sick but doesnt seem to be helping me at all. I dont need somone to hold my hand or anything but at least point me in the right direction. Hope someone can give me some input.. primary thinks I have had this for 30 plus years. Great!

[SusieS2010]

Good luck mykids. I am looking forward to hearing all about it.

[mykids247]

Finally got an appointment with a NEW dr. A hepatologists that was refered. Please let this be the one. Comes with great credentials and I am hoping for the best. Now just to wait until 6/24 to see him. Hope that the waiting is the hardest part and I get some good or at least positive news. I'll keep you posted, wish me luck!

[mykids247]

Thanks Susie, so now I have to ask. What would other reason be to lower these values if not hcv?

[SusieS2010]

Hi  mykids. That was me who mentioned it. I have had compensated (that means liver is still working fairly well) cirrhosis for at least 19 years. The first time I saw my doc, before my biopsy, he said he thought I had cirrhosis. His main reasons were I had a low wbc and low platelets. The platelets are the first things that drop. The other things that Bill mentioned, such as low albumin, INR, high bilirubin, etc., often happen in later cirrhosis. I have never had anything else indicative in my lab work of cirrhosis. While it is true that cirrhotics don't respond as well to treatment, you are a genotype 2 and you have never been treated before. Even if you do have cirrhosis, you chance of clearing the virus is very good. Try not to worry too much. As I have said, your platelets and white count may be low for other reasons not related to hep C at all.

[mykids247]

ok not sure whats going on here but just having a terrible time answering bills question. Maybe its going to another page someplace. So short and sweet this time. The reason I asked about cirrhosis is that someone on here mentioned that with low wbc and low platelets that was an indication of cirrhosis. I do not have any of those other symptoms. Ok going to hit post lets see what happens.

[Bill1954]

No, these are good valid questions you’re asking; and a good way to find out is to inquire.

Cirrhosis can be determined by liver biopsy; the liver ‘architecture’ is actually altered as a result of extensive scarring and pathology can identify the changes.

Frank cirrhosis can also be readily determined from a combination of rather common lab results; changes will likely be apparent in platelet, albumin, bilirubin and INR values. Also, physical findings such as gross accumulations of fluid in the abdomen, bleeding esophageal varices, encephalopathy and other signs and symptoms are often apparent.

Early, compensated cirrhosis can be a bit more difficult to discern without liver biopsy, but a good clinician should be able to spot trends in labs if one is participating in medical care regularly.

And finally, yes; cirrhotics respond less readily to traditional interferon/ribavirin therapy, although this may be changing with the advent of newer, more efficacious drugs reaching market.

Do you have reason to believe you have cirrhosis?

--Bill

[mykids247]

how do they test to find out if you have cirrhosis. Are there symptoms that are specific to that? Just reading something that someone (dont remember the name) put up about if you have cirrhosis that you dont respond to treatment as well as if you did not. Did I read that right? Sometimes feel like I'm asking dumb questions but I'm new to this.

[SusieS2010]

Yes, it means person has been tr4eated for 4 weeks and has a rapid response which bodes well for clearing the virus.

I am so glad UMiami recommended someone for you closer to home. YIu must feel a lot of relief. When you can please drop me a note and let me know how you liked the doc so I cn add him/her to my list for other people in your area.

[mykids247]

Not knowing that much YET about this disease when you say undectable since week four does that mean you have been being treated for only four weeks? Sorry for sounding stupid but I'm trying to learn this stuff. Thanks. And if you are being treated how are the side effects? as horrible as I have read about online?  :( sure hope not.........but need to know hopefully new md. will want to treat me. Gotta get this monkey off my back!!

[mykids247]

found a new doctor a referal from a md. in Miami, he is near by and a hepatologist. Yeah!! Maybe finally get some real answers and start moving in the right direction or any direction for that matter. All labs sent to new dr. just waiting now for office to call with an appointment. Trying to be positive. :)  doom and gloom wasnt doing me a darn bit of good. Thanks again for all your posts. As soon as I hear anything I will update.

[SusieS2010]

I have to disagree with the person who said your labwork is not indicative of cirrhosis. While you may not have cirrhosis, most people in the early stages have lab work just like yours. I have had cirrhosis for at least 19 years and the only thing off in my last blood work was a slightly low white count. My platelets usually run around 115,000 to 120,000. Last month they were up around 175,000. Everything else is always normal. Oh, my AFP levels run slightly elevated between 9 and 11.

I enjoyed talking to you. Let us know what happens when you try to get an appointment.

[mykids247]

spoke with susie today and going to try to get to see a dr. in Miami specialist, she says is the best. Feel so much better with all this support. Cant thank you all enough. I will post if and when I get into see the md. and if I dont I will start pounding the pavement again. I am a very strong and stubborn woman and I NOT let this thing bring me down anymore. I have way to much to live for as we all do............just got home from work and this is just what I needed tonight. Happy face :) Thanks again, I will be intouch

[willbb]

sorry I meant to explain further those values.

WBC(white blood cells)  normal is : 4 -11    (yours are slightly low ,however this can usually be managed in treatment if need be

RBC: normal is:3.6 -5

platelets: normal is: 145  -400  ( this is the blood clotting mechanism which is what they are worried about)

Bilirubin: normal is: .2  -1.2

Albumin:  normal is: 3.5  - 4.8

Prothrombin time (time for blood clotting..normal is  11  -13.5 sec)

Ferritin( iron storage ) normal :10   -150   this is somewhat high ,however with HCV these values can go much higher .and this number would not adversely affect treating.

[willbb]

Hi there ....actually other than the platelets being low ,these blood values are all basically in the normal range.  This is obvoiusly a good thing ,however as we have suggested you need to be seen by a liver specialist  and get his/her expert advice on treating with those low platelet values.

The values you have listed are not typical of having cirrhosis,however  a specialist would run further tests to ascertain the condition of the liver and then be able to discuss treatment options with you.

As we said geno type 2 is very succesfully treated (approx.80 %)  now it is just a matter of getting to see a specialist to proceed further.

Good luck

Will

[mykids247]

not sure what test results to post so I will put up the ones which after chatting here seem to be the most important.  wbc 2.1 rbc  4.11 platelets 62 bilirubin 1.0 albumin serum 4.6 prothrombin time 11.6 ferritin 326  Thanks again.

[HectorSF]

Lots of good info was given in other posts.
I have few issues I would like to highlight that are important for you to realize.

As everyone said you need to go to a specialist. A liver specialist. A hepatologist at a liver transplant center. Why? Because they are the only doctors who will be willing and able to provide you with the resources (treatments for abnormal blood counts, etc.) to help you make it through treatment. You must realize that even though you feel fine that does not mean your liver isn’t very diseased. A liver can continue to function with only 20% of the organ working properly. The issue for you is that you have genotype 2 which is an easy virus to treat. As someone said you have an 80% chance of clearing the virus. And that is a 24 months treatment. Half of time most people here had to do treatment.

How do I know this? Based on my experience with hepatitis C and advanced liver disease. So I have had or still had similar blood test results as yourself.

On the positive side you have a genotype of hepatitis C that is relatively easy to cure. The problem is you may be too ill to treat. Meaning your liver disease caused by the hepatitis may be too far advanced for your liver to handle such powerful drugs. There are ways of doing treatment even with the blood tests results you have, but only a very experienced hepatologist who has done this before and will do this for you.

You do need someone to more than hold your hand. You need a specialist to tell you if you have cirrhosis or not and what your options are after a full medical assessment. In the worst case you may have compensated cirrhosis. This seems to be what your doctor is implying, but in my opinion it is unethical that he doesn’t state this. Cirrhosis and advanced liver disease can be a life and death issue. I believe that it is in the patients’ interest to be informed of actually what their diagnoses is, what treatments are available and what their prognosis might be based on the options available. Then it is our responsibility as patients to decide what is best for us to do. If you have advanced liver disease and you can’t rid yourself of the cause of the injury to your liver in time you will need a liver transplant to continue living. I don’t say this to scare you but to try to impress upon you how serious the situation could be. So whatever you decide to do you should not wait any longer.

As can-do-man said, you also need to find out how low they will allow your platelet count to get before stopping treatment. I also had a platelet count around 60,000-70,000 when I started treatment. By the end of 12 weeks my platelet count fell to under 20,000. A lowering of platelet count is a side-effect of the peg-interferon and will happen. How much? Each person is different.

“As far as biopsy he was afraid of bleeding”. This is not a good sign. Bleeding and having problems clotting blood is a sign of advanced liver disease. What is your INR/ Prothrombin Time blood test results?

Please post your latest blood results online. Although we are not doctors we can give you feedback that might provide more insight into the condition of your liver.

“Very difficult seeing as I have been healthy my whole life never na-da nothing, no medication for anything. Most people are.” They have minor things flu virus, allergies, sprained muscles but we are not going to live forever. Something comes along sooner or later no matter how “good”, “wealthy”, ”famous”, or “powerful” we are. Don’t dwell on the past. The past is gone. Take action now, as you could have a very serious condition. Hopefully all will be well but sticking your head in the sand or worry about the past or how you got the virus is a waste of time. Put your time to use and get help now.

Meanwhile realize that liver disease is not something to be ignored because you feel “fine” now. People also feel fine with cancer until it reaches a stage where it interferes with the functioning of a body organ of symptom. Feeling good and looking good doesn’t indicate what is going on inside your body. Otherwise why do blood tests, imaging, etc.
Let us know what happens. We can help along the way. But it is your decision alone as to what you choose to do.

Best of luck!
Hector

[mlkinmb]

I have to agree with what you have been told, move forward, don't think about how you got where you are, focus on how you are going to clear the HCV. As for me, I have not started to treat yet due to lesions which were seen on my liver and right kidney during my biopsy. I plan to treat as soon as I'm able, in some ways treatment does scare me, but I've told myself that I'm going to do it. Your VL seems low to me, mine was 23 mil+, and I'm a GT 1a, biopsy came back as G2, S2. My last CBC showed WBC @ 17 and platelets @ 599, both of which are off the charts, but I have no spleen. My AST/ALT's remain within range, but on the high end at 34/46. Neutrophils(A), Monocytes(A), @ Lymphs(A) all show high flags, these items concern me because of the lesions. With all that, I do plan to treat ASAP, pending my next CT results, and what the ID docs say.
Find a good doc, ask what's up, move forward, and take care of yourself! Mike

[can-do-man]

While i agree you can treat, finding a doctor thats willing to begin treatment with your platelets that low might be really hard to do. My platelets average in the 80's and tx caused them to drop rather quickly and got as low as the mid 20's. Make sure upfront just how low a doctor is willing to go before stoping tx.

As for a biopsy i wouldn't risk it, besides your bloodwork seems to point to cirrhosis, being a geno 2 is in your favor, just make sure everyone involved agrees if treatment is started on the stoping points........ Wishing you the best going forward.

cando

[babs824]

i agree with others posting. treatment does not change from those who got this disease snorting coke to those shooting heroin or receiving a transfusion. your guilt is a waste of energy as is trying to find out how u got it; so try to see this in another light. i am geno 2 and had a high viral load. my disease has been undetectable since week 4 nearly 9 mos ago and i feel fabulous! try to stay calm. things are not always as bad as they look at the outset. i was where u r and i know that from experience.
hang in there, babs824

[SusieS2010]

Hi there. I agree with most of what the others have told you except the part about the biopsy. Genotype 2's rarely get biopsies because they are so easy to treat. With platelets that low, along with low white count, you can be pretty sure you have cirrhosis (I do as well so don't panic). But as Will told you, you can certainly still be treated. They can use the growth factors (Neupogen to keep your white count up if needed) and they can watch your platelets as well. Find a hepatologist or GI who has treated other cirrhotic patients,. If you need help with that we can help you. I will message you with our toll-free number.

[Wildorchid1121]

First of all: Positive Attitude!

I've had Hep C for 32 years from a blood transfusion. I was diagnosed by a primary physician back in 2003. I went through my first treatment in 2004, and just started a study with TMC435 - 7 weeks ago today.

Did you ever get a blood transfusion?

You need to stop thinking of this every second of your day, it will consume you if you do. Keeping a positive attitude, doing research, and getting to know this disease will give you your best tools to deal with it. Learning what's new out there will allow you to choose what's best for you. You need a Hepatologist, and if you find one who can get you in a study, even better.  

I am genotype 1, which is more difficult to treat, and I don't let that bother me. The way I look at it? It could have something worse. There is a light at the end of the tunnel, believe me. Instead of concentrating on the disease, concentrate on doing research, empower yourself to better focus on curing yourself, and not on getting stuck and not moving forward.

Don't think of it as payback from your sins, you know you have the disease, now get up and go for the cure, you deserve it!

Carmen

[willbb]

Yes...we are here to talk to ...anytime you feel the need to say something or to ask anyone's opinion ..just fire away.  To different degrees we are all in the same boat  :)

When you see the specialist tommorow... ask him exactly why he is reluctant to treat.  Have they to date done other blood tests to help ascertain the liver function.. like Albumin, INR, bilirubin..these can all give some indication of what might be going on.  Ask for a hard copy of these results and any further tests they do as then you can post them here and we can help you decipher . It seems many doctors don"t give us the whole picture at times.

At this point it really doesn"t matter how you contracted the infection...what is important s  what you do about it from here going forward.

Also ..ask your gastro what his experience is with dealing with patients with HCV  ,,,surprisingly enough many of them are not that experienced ... you need to see someone who is

good luck and remember  we are here for you..

Will

[mykids247]

thanks for getting back to me. In tears here finally someone to talk to about this. Its gonna be a good day. It was actually the gastro md who told me because of low white and plat. that he could not treat me. As far  as biopsy he was afraid of bleeding. This is one of those between rock and hard place im afraid. supposed to have md. apt with gastro tomorrow but really dont know if he's the guy for me. Very difficult seeing as I have been healthy my whole life never na-da nothing, no medication for anything. Now this crap. Never did drugs via needle, smoked in the day and did cocaine in the day but that was 30 years ago. Pay back from my sins? Perhaps. Hope not. I eat sleep and drink this diease. Cant seem to move forward. Constant.

[EyesofBlue55]

Whole heartily agree with Will.Find you either a gastrologist or a hepatologist that is familiar with treating Hep C.A regular PCP will not know as much.Most  people dont know they have hep c until years later when they have symptoms.It is a slow moving disease.Your primary should not be telling you that you are very sick but wont treat you.I would run-not walk to another dr as there is treatment options for you!!!good luck and we are here for your questions-cindy